Life After Brain Surgeries

Yes, you read that right. Surgeries. My one planned brain surgery turned into 2 brain surgeries, several procedures, and 3 hospitalizations. I never planned on this.

I realized, after chats with my bestie, that people only see what I allow them to see. I post on social media with updates and I always seem so positive and upbeat. What people don’t see are my breakdowns.

I breakdown at least 3 times a day. Sometimes more. Songs that used to give me strength now make me weak. Things, simple things, I can no longer do make me feel depressed. I realize my body needs time to heal. Twice as much, if not three times as much as I planned. And that’s frustrating.

From time to time I discuss my pain, but more often than not, I’m reporting my pain free days. I don’t discuss my nights without sleep due to pain, my days when I’m too weak to go up and down the stairs, or the times I wish I had never had the surgery to begin with.

I don’t let people see me cry. Only those close to me have heard me cry to them on the phone. I lay here alone crying so often it’s beginning to make me think I’m losing my mind. I will break down and cry over the simplest things.

The nurses and others who have had similar surgeries tell me that’s normal. To cry a lot. To be weak and tired. But I feel so alone, so tired, so sad. I had the surgery to get my life back; to give my kids their mom back. Last month, I spent more days in the hospital than I did at home. I have had stitches (technically) in my head for over a month. I have to wrap my arm in plastic before showering (I have a PICC line for IV antibiotics). My life isn’t normal right now and I’m so damn sad about it. I struggle to help my kids with things. I struggle to do what I need to do to care for myself let alone 3 other people.

So while many see my positive and humorous side and think I’m just oh so strong, I’m not. I’m weak. I’m sad. I’m tired. I need y’all to understand that.

And as harsh as this may sound, being told to keep my head up, be patient, or to stay positive doesn’t help me. It makes me feel worse. My head you want me to keep up is broken. It’s broken, swollen, and hurting. My patience has worn thin. And it’s hard to remain positive when so many negative things have happened to me.

Yes, I realize some people have it worse. I know some people didn’t wake up this morning. I realize my community has lost many people lately. And I feel the loss and I feel the pain of all those suffering. But that does not make my feelings less valid!!

I am allowed to vent. I am allowed to feel like this. My feelings are valid. I do not expect any replies to this post. I do not mean to hurt any feelings. I just needed to say all of this. I apologize if any feelings have been hurt. It’s truly not my intention.

Life After Brain Surgery

A week ago my family was all meeting up at a parking garage outside of University of Maryland Medical Center Baltimore, gathering our belongings necessary for the long day ahead, and rushing inside to get to where I needed to be by my 5:30 appt time. Sadly, the hospital sent us on a long run around until we finally landed right where we needed to be, but we got there. Tension was high among the group, of course. The nervousness in the air; palpable.

I was asked if I was ready, more times than a few. How do you answer that? How are you ever ready to risk leaving your family behind? How are you ever ready to risk not coming back to them the same as you left them? So I lied. I was ready, yes. I lied and said I was fine. I lied and said I was going to be okay. I was petrified.

Questions began, IV was started, prepping was moving at the speed of light, but I was still stuck. Lingering, waiting for my entire family to hug me all at once. What would be my last thing to say to each one of them? How do you decide that? You cannot scare the kids, Kristen. You cannot upset your sisters, Kris. And my God, don’t let my parents feel my fear.

Last night I was asked what I felt in those moments. What was it that I told myself to help me get through it and make the final decision to go through with it.

The answer is my life. I wanted my life back. The vibrant, exuberant, fly by the seat of her pants girl was gone. She was replaced long ago by a zombie of a woman that was barely surviving this world. She could no longer head out on grand adventures, planned or otherwise. She spent her days hardly able to make it up and down the stairs let alone to a school event with homemade brownies.

She couldn’t make it to concerts with her sisters anymore. She had to cancel plans with friends more times than a few. She couldn’t get outside and run around with her two sons anymore. Life as she knew it ceased to exist.

But this morning. 7 days after the scariest decision of her life, that girl woke up at 5 am without an alarm clock, went downstairs without a single creaking or aching bone (stairs are a different story), and made herself a cup of coffee. Do you realize how long it has been since that has happened? I won’t count the nights where sleep never happened and I got up at 5 to start a day after a night of no rest. I’m talking actually slept for hours, woke up, went down, and made my own damn coffee??

Let’s ask my little baristas when they wake. I bet ya it’s been a while.

Good morning, world. It’s good to be back.

Little Things

So yesterday I broke down several times. Surgery is one week away. So of course my nerves are a wreck. It’s normal. I’m told I wouldn’t be human if I wasn’t worried. But let me explain why I broke down yesterday.

I was cooking more meals to freeze for the kids to have during my hospitalization and recovery. My oldest son was practicing his trumpet. (actually a 1956 coronet which is so bad ass) I decided to pick it up and wow him with some things. Ya see, I taught myself to play the trumpet when I was 10ish. Yep, picked one up and taught myself. I was incredibly talented. I say this not to brag, but just to say I am confident in that fact. My talent was passed to my kids, each knowing how to play but only my older son choosing to play. Anyway….

So I played a few scales, a little improv, and then it happened. The damn nerve in my face fired like crazy. Electrical shocks down my jaw. The hammering pain in my bones of my face. And reality hit me.

Even though I don’t play regularly, it is something I do enjoy. I love to just play and reminisce about my youth and my time in band, both concert and marching band. How I was chosen as a freshman in high school to play with the University of Maryland Eastern Shore band for commencement that year. How much I loved having solos during concerts. How I know it was something that made my parents proud. And it truly was a passion.

Now, I can’t play. And that devastates my heart. If they can’t fix my nerve disorder with this surgery I will not be able to play. Ever. A little thing with a huge impact.

My heart is hurting. My soul feels like it was a personal blow. She is weary. She is broken.

Little things can bring with them the misery of a thousand broken hearts.

Screaming in Silence

Pain, ripping flesh, breaking bones, searing flames of agony.
This isn’t torture. It’s my normal.
Tears flow down swollen cheeks to meet the pool gathered on my pillow. How many more nights will this flare last?
The drill in my ear, pressure building. Electric shocks through my jaw. Someone stop it.
Turn off the power. Cut the nerve. Rescue me. I’m dying. Please help me.

I wrote that poem in the middle of a flare up of the neuralgias I love with. They are always constant, but some days they flare so bad I cannot function. It’s unbelievably frustrating. The pain is beyond what the human body should have to endure. 10 days to surgery. I am so ready for this to be done!

~Kristen

Night Thoughts

I often lay awake at night. Blame insomnia. Blame anxiety. Or blame what I call painsomnia. But whatever it is, I just lay awake in bed staring at the ceiling, wondering what this world has in store for me next. And why I was chosen for such a difficult path.

It often sends me down the path of wondering about religion and how certain religions would look at my situation differently. Some people say it is what God has intended and he wouldn’t give me more than I can handle. Or that he may be preparing me for something even more difficult so I must become stronger. You get the idea. Others might say it is my karma. A punishment of sorts for some thing(s) I did in a past life. I realize that there is also karma in this life, but I know I have not been a bad person. Not bad enough to warrant the life I am currently living.

Either way, regardless of why or how I got here, I am struggling. I wonder why I don’t have someone by my side as I take on such a difficult journey; why must I do it alone? Lately, I don’t even feel like my parents get it. I don’t feel that they truly understand the intensity of what I live with each day. Of course, nobody really does because I don’t allow anyone to see. Fact is though, folks, that I am having brain surgery. I can’t make up some mysterious condition that will convince a neurosurgeon to be like, “Yup, gonna cut her brain open and see what we find”. It doesn’t work that way. And in today’s times, we have a plethora of information at our fingertips. If you don’t know about something and choose not to learn more, that is out of pure ignorance, not for lack of access to information.

I just wish I had more people close to me that understood. It seems like those that understand are from online support groups and they are all over the world. It seems extremely unfair. I realize that I am one day going to look back on this and realize it made me stronger. And I’m sure there is some grand plan in this universe that I am aimlessly approaching. One day, this will all make sense. For right now, I’m tired.

Moving On

When you realize your worth, you laugh at those that didn’t see it. You pity them for missing out on all the awesomeness that is you. Yes, of course you mourn for the “what could have been”. But you look ahead at what will be!

We have formed these ideas in our minds of what could be. And we get excited about the possibilities. We begin to feel like we are finally heading in the right direction. Being led to our destiny. And then the crash. The realization that we aren’t going to have what we thought we would. That moment when the truth hits is like a knife in the chest; a punch in the gut. Why couldn’t they have just followed through? Those fears that held them back have now crushed your dreams. It’s a terrible feeling. I know.

Moving on, though, is a beautiful thing. When you can feel yourself getting stronger each day. When you can finally hear that song or see that person on social media without feeling weak inside. When you can feel your strength building little by little. One day at a time. When you realize you are worth far more than you ever knew. When you see what you should have seen all along. And then you apologize to yourself. You need to make it a point to do that. Apologize for being blinded by love. Apologize for the way you viewed the world through rose colored glasses and ignored every red flag your inner self tried to point out. Apologize for being human. For wishing and dreaming of what would never be. But warn yourself, it’s probably going to happen again. And that’s OK!!

Too bad they were too scared of what could be. It could have been amazing. But what is to come will surely be better. Because now you are wiser. Do not put yourself down for trusting the wrong person. And do not allow that person to influence the way you view the next person. Do not hide away, either, my darling. Do not cut yourself off from the next possibility. Live your life one moment at a time. Allow things to happen, both good and bad. Because that is the beauty of life.

 

Life With Chronic Illnesses

A couple weeks ago I visited my rheumatologist to discuss my fibromyalgia. I haven’t had too many “bad” days, so it was just a routine visit to discuss meds and whatnot. He informed me that a new medicine I was on (prescribed by neurologist) would likely lower my white cell count causing me to have difficulty with fighting off infections. Yay me.

Today I got about 40 needles in my face, head, neck, shoulders, and back. These needles, though incredibly painful, allow me to function. They allow me to get up out of bed and at least try to be normal. These needles are botox for migraines.

But before the needles happened, I had to discuss some weird side effects from that other medication (mentioned above). I explained to my neurologist what had been going on since increasing the dosage. Skin has been peeling off of my fingers and my feet. I’ve been sick with what feels like the flu. Turns out I am severely allergic to the only medicine that was keeping another chronic condition semi-tolerable. A condition I visit a neurosurgeon about tomorrow. A condition that chose me as one of its few victims this year. Trigeminal neuralgia. So tomorrow I will visit University of Maryland Neurosurgery to discuss surgical options for this pain, also known as the suicide disease.

Have you any idea the fear involved in deciding on a procedure that uses radiation to essentially kill a nerve right where it exits your brain? And even though the pain is the worst I’ve ever felt in my life, this procedure scares the hell out of me! I realize that with the 3 conditions, also known as my pain trifecta, I am not living the life I wish to live. And I want my life back for sure. The risks, though; I’m just not sure I’m ready for them.

At this point, I am not medicated since I had to stop the one and the other makes me way too antsy. I will struggle through one more night of insomnia tonight before making my way on my 3 hour journey tomorrow to see the surgeon. I’m scared.